I started back to work…

Mark at Aldi’s today.

….and the time and energy to write disappeared. Here’s a quick update, minus creativity. Mark is home. The amount that he’s changed over the last three weeks is incredible. Three weeks ago, he could not spell the word “world” backwards. Two weeks ago, I watched him lean over to zip up his winter jacket and was amazed to see that he could do it. Today, I watched him write down a note about his breakfast intake, and he correctly remembered the day of the week — Saturday. He is thin and tired and also so much stronger as his body and brain recover from a brutal treatment protocol that seemed, without exaggeration, like it almost killed him.

A fairly comfortable daily pattern has evolved. Bobby arrives by 6:45 every morning and off I go. Bobby rotates through and exercise plan that he creates for Mark everyday: resistance bands, free weights, stairs, balance exercises, mental exercises like playing cards. Bobby exhibits beautiful intuitiveness about when to nudge Mark to do more or back off and let him rest with a “you’re the boss. I’m your friend. I’m not here to hurt you, I’m here to help you.” He makes sure Mark stays hydrated. He gives Mark feedings through his feeding tube as needed, and eats breakfast and lunch alongside Mark. In the afternoons, Bobby stays until a friend or my parents come over, or until I come home. I make dinner for the family. Mark and I watch Jeopardy. I give Mark a feeding through the feeding tube. A “bolus,” it’s called, but Mark somehow can’t hold onto that word and keeps calling it a “botus.” Beverage Of The United States? I set up his meds for the next day, we count his daily calories to see if he’s hit the minimum of 2000 (he’s really good at only hitting 1700-1800), and I go over the next day’s schedule with him, which he writes on a tabletop white board so he can refer to it the next day. I walk him back to the bedroom by 8pm and make sure the bedside commode is clean and that he’s safely in bed. I’m usually not that far behind him in calling it a day.

Mark’s brain is much more online than it’s been since about last June. This is a blessing, of course. It also means that Mark is really experiencing his illness, cognitively, for the first time. I ask him what he’s thinking about as he stares off into the distance, and more often now he’ll say “the possibilities of my life” or “mortality.” He lost his balance on Wednesday and got a little gash over his eye; this super scared him, even though Bobby was right there and caught him on the way down. Mark had been starting to push against the need to have someone with him at all times. But after the fall, Mark didn’t want to leave the house because he was newly alert to how his legs can feel weak and give out at anytime. Let alone the potential for seizures (which he still has periodically). He started using his walker to get to the bathroom or the bedroom or the kitchen.

I have continued to get calls, so many calls, about his care. Nurses, insurance, PT, OT, and speech. Two evenings ago a nurse called to check on him. We went over the equipment we have and don’t have. I thought we had it all: a wheelchair, the bedside commode, a blood pressure guage, feeding tube supplies, pill organizers, a regular standing-only walker and, arriving soon, a walker with a seat. “You don’t have a hospital bed,” she pointed out. Not there yet, I said.

Today, we had our first outing with the wheelchair. Mark wanted to go to Aldi with me; it was his idea to bring the chair. We maneuvered through the store successfully, equipped with a shopping cart, a wheelchair, a just-in-case a vomit bag and a bottle of seizure-stopping medication. A tiny stressful for me as I pushed the loaded cart while he foot-paddled his way down the slight incline to the parked car. We came home and took a long nap.

Mark’s treatments are finished for now. We are in a time period of healing and recovering. His Big Scan will be in mid-April. It will tell us all we need to know, we hope, about the efficacy of the treatment. A fork in the road. Another one.

I woke up early today to drive Matthew to the high school for a speech and debate tournament. Then Mark and I had coffee on the couch while I finished my latest murder mystery novel (I’m in a rut) and he read last week’s NYT Sunday Review, the news so dated after this week’s massive coronavirus scare and the shrinking of the Dem primary pool. I watched him read, stunned that he had the vision, cognitive capacity, and energy to read multiple articles. The changes keep coming, and some days — despite all we’ve been through — I find myself thinking it’s going to just continue to be a steady improvement. Bobby reminds me that this is just like in AA and NA recovery: “Sometimes it’s three steps forward, a half step back, Di.”

Today at breakfast I said to Mark, “how’s your nausea?” “Am I an alligator?” he said, repeating what he thought he had heard. “Did you really think that’s what I asked?” I laughed. “Yes,” he said.

That’s my husband, ya’ll. If you look at the photo, you will see he has taken out his wallet so he can pay. Because that’s the kind of man he is, the guy who wants to take care of me.

What is marriage? What is a partnership? For better or for worse. For richer or for poorer. In sickness and in health.

I’ve got this. I’ve got him.

Preparing

Mark comes home on Friday. His case manager called today to relay notes from the rehab team’s weekly meeting about Mark. He’s reached “independent” in a few areas, including getting from the bed to the toilet. He’s assessed as needing to be “supervised” at many tasks, including walking, bending over, and eating. His orientation is “intermittent.” His ability to bathe is “supervised” and requires “prompting.” They ordered a bedside commode for the home.

The infusion company called me to set up the delivery for tube feeding equipment. A nurse will come on Saturday to make sure I know how to use it all. OT, PT, and speech therapy still need to be set up to come to the home next week. He goes back to the Cancer Center next Tuesday for IV fluid, bloodwork, and an oncology appointment. Tonight, I went on Amazon and bought a few more things. More anti-slip stickers to place on tiled bathroom surfaces. A moisture-proof bed pad.

Mark comes home on Friday.

I am trying to be ready.

For Love

For two hours, my Valentine’s Day included Mark. During the morning hours before I arrived, Mark worked with speech, occupational, and physical therapy. Bobby wants to be ready to coach Mark at home, so he’s been joining him at the rehab a few days a week. Bobby updates me on what I’ve missed. The occupational therapist had presented Mark with cards with images of danger. For each, she asked Mark what he would do if he encountered the situation. “Like a fire?” I asked. “Nah,” Bobby reported, “Like an area rug.” In physical therapy, Mark worked on going up and down stairs and walking with less support. In his dysphagia eating group, Mark did not throw up breakfast directly onto his tray, as he had the previous two days. He was advanced from a full liquid diet to “mechanical soft foods:” chopped-up this and that, soft-cooked vegetables. When I arrived, he was dead asleep from all the effort. I put his unopened Valentine’s Day card on the bedside table, crawled into the hospital bed with him, and quickly fell asleep.

I start back to work tomorrow, having used the amount of FMLA that I am willing to at this point. I am hoarding the remaining weeks in case Mark needs me more at another time this year. It could happen. I love teaching, and I look forward to normalizing my life. But I feel anxious about returning to the bright, loud world of laughter and learning. I’m out of practice of “normal life” away from beeping machines and wheezing sinuses. I’m also trying to prepare for the “how’s Mark” questions. I’m testing out: “He took a dip in January, and then another in February, and now he’s slowly getting stronger.” I think this is a kinder approach rather than the more descriptive reality: “He’s in an acute rehab hospital, in a wheelchair, in disposable hospital briefs, with a feeding tube. He can’t see well, hear well, or reliably hold a thought in his head.” I could try giving an illustrative example. “Last Friday, the speech therapist asked Mark to name a word that starts with the letter A. Silence. She prompted, ‘How about a fruit that starts with A?’ Nothing.” But this is an incomplete picture, because sometimes Mark is witty and present. When my parents visited last week, they noticed pictures of Matthew and Ben on Mark’s bulletin board, but not Michael. “Where’s Michael’?” they asked him. “They are all among the missing,” he replied. The kind people I work with will inevitably ask me how I am doing, with a concerned and sincere little wrinkle in their brows. I’m trying out a boxing metaphor. I’m from Philly — it can’t be helped: “I’m in an endless bout in which I get knocked down over and over, crawl my way back up, bloody and weak, and have to keep fighting.”

Bobby tells me that in recovery, they have a saying: “First thought wrong.” I’ll probably stick with “hanging in there.”

It is hard — very hard — to watch Mark have setbacks. The bar for wellness gets lowered ever more. More than I knew it could. He descends to some new low, and I hunker down with him, cheering him on as he takes incremental steps forward. I scrape the sides of my reserve of energy and come up with some scraps to offer. He tells me that his vision is not getting better. In fact, it has returned to closer to what it was in July when the tumor was wrapped like a viper around his optic nerves. I want to understand how he sees the world. “What’s it like?” I tried again. I’ve asked this question many times, and he usually does not answer with any clarity. This time, he seemed curious about his vision. He slowly took turns closing his right eye, then his left, looking off over my shoulder. Finally, he said his right eye sees gray shadows and shapes. His left eye can see quite well. His brain is having a hard time integrating and making use of these two fields. “Well, at least you’ve got one good eye,” I responded. And then, “This could work out for me. As I age, you will only sort of be able to see me get older!” He smiled. I wrestled down another piece of loss rattling around in my brain.

Yesterday, after letting him sleep for a while, I asked Mark if he wanted to talk a walk. My stubborn, strong, independent man silently moved from his bed to his wheelchair “to save my strength,” he said. I followed him out of the room. He pulled himself along through a combination of tiny paddling actions with his feet, supplemented by his hands inching the wheels forward. I took the tiniest, slowest steps possible to try to match his pace. We went into the dayroom where Mark eats his meals under the watchful eyes of the speech therapy team. I turned channels on the TV and found a NASA station. They showed that famous image from last year– the first ever image of a black hole. It doesn’t look like much: a black circle with an irregular glowing arc around the lower half. They explained how time and light warp around the black hole. How nothing can escape the event horizon, and if that boundary is crossed, whatever has crossed it is pulled eternally into the density and darkness in the center.

These last few weeks have pushed me to that line. When I look at Mark’s unseeing eye, or smell tissue decaying on his breath, or watch him choose the wheelchair rather than walk, I find myself getting sucked in too close to that dark center. My Mark who could do the New York Times Sunday crossword puzzle, did geometry for a living, and held the motto “I got this” proudly. I have to back away, look away, escape to a safe distance or I fear I will not be able to return.

When we first were dating, I told Mark that I wanted to be known, to be accepted for exactly who I am. We know more of each other now in so many ways, and yet we also have less. He can’t accompany me as I move through the world. He can’t share the daily stories of life with me. We can’t go to restaurants, or the movies, or for a walk in the park. The world of us is as small as the part of the couch or bed we occupy together when we sit or lay down. It’s as small as the breaths we breathe as we hold each other. The gentle boop on the nose we give each other. We have no texting, no phone calls. There are few knowing glances, few moments of shared laughter. What we have is love in our hearts, and the simplicity of being able to be next to each other. In a neurology unit, two oncology units, a skilled nursing facility, a senior living home, an infusion center, and now at an acute rehab, Mark lays in bed and waits while the world of medicine works on him. In each place, I have wedged in between the safety railing and Mark. Mark curls his cold, tired body up against mine, finds my hand to hold, and we sleep. I wake when doctors and nurses come in, push the buttons on the bed and slowly raise us up to a sitting position to talk. We’re like John and Yoko on an interminable Beds-in for Peace. Beds-in for Love.

When I left that Mark yesterday, he wanted to walk me out. He got into his wheelchair and wheeled down as far as the nurses’ station. I leaned over for a kiss goodbye. As I walked down the long hallway, I turned back once to look. He was watching me with his big, quiet, blue eyes. He raised a hand to wave as he sat watching me walk away.

God

The snow was bright and beckoning yesterday morning. I decided to prise myself off the couch and do something I haven’t done in a while; take Duppy for a walk. The luxury of the fenced-in yard had hit me fast when I moved to the deep ‘burbs, and while Duppy loves to run laps, she’s much more excited to hear the crinkle of plastic newspaper bags being pulled out of the closet and the word “walk.” Every tiny muscle in her body quivered as she tried her best to sit still while I pulled on my snow boots and got her into her harness.

We walked a few yards down the road before encountering a woman turning onto the street from a driveway. This house had sold in the fall — I hadn’t seen the new family yet. But from my station on the couch, I’ve seen this woman walking the neighborhood for the past few months. She’s not quite five feet tall, elderly, swathed in brightly patterned skirts and overskirts, always with a scarf wrapped around her head. I held Duppy back, taking care not to make this woman uncomfortable.

She slowed her pace: I slowed my pace. She took a couple steps toward me: I took a couple steps toward her. She made little walking-feet movements with her gloved fingers. She pointed up the hill. She made a looping motion. “Around the block?” I tried, “Yes, me too.” She made a circular motion with her hands that looked like the “shall we dance?” gesture ballet dancers make before a pas de deux. Yes, I nodded. She patted my arm. Together we began walking up the road.

She talked almost continually for the first part of our walk. I watched the smile lines around her eyes as she talked animatedly. I had no idea what she was saying. I caught the word Nepalese. She knew the word “good.” “My name is Diane,” I offered, patting my chest. She pulled her scarf aside and plucked at her shirt, smiling. I wasn’t sure if she thought the word for “shirt” in English was “diane.” She started to make medical-looking gestures. A needle in an arm? A lump in the belly? She talked and talked and pointed to her stomach. I worried that she was telling me she had cancer. Finally she made a cradling motion, and I understood that there’s a baby in her household.

We fell silent as we turned the corner at the top of the hill. Occasionally, I spoke just to put pleasant sounds in the air between us. Oh look, a bird. Hmm, the sky is so gray today. Isn’t the snow beautiful? She smiled back. Eventually she started pointing at my nose and laughing. Her face was hidden safely under her scarf. I knew mine must be turning red. She pointed at my cheeks and laughed more. I laughed back.

When we turned the final corner and reached her driveway, we stopped. She pointed to my nose and cheeks with concern. “I’ll go get warm,” I said. She made the pas de deux gesture. “Yes,” I said, “good.” “Good,” she said, and she walked back up her driveway.

People bring up God a lot these days. Earlier this week, when Lizzy, Alma, Anya and I were sitting at the hospital with Mark, a rabbi came into the room. He introduced himself as a hospital chaplain. Apparently, when you engage palliative care, as I had, the chaplain comes with the package. I hadn’t realized. Over the course of the week, I had run into a kind, elderly Catholic chaplain. The first time, I was on the elevator with three women from the janitorial staff. When the chaplain got on, the women immediately bowed their heads. He blessed each of them, and then looked over at me. Sure, I said, I’ll take one. He laughed and blessed me, too.

Rabbi Perlman was new to me. He was relaxed and affable. He started by making small talk with Mark. “How are you feeling?” “Are you in pain?” Lizzy, Alma, Anya and I quietly studied our phones to give them the illusion of privacy as he arrived at “Do you have faith you’ll be healed?” and “Do you believe in God?”

When a psychiatrist came to talk to Mark in the rehab on Friday, his opening line was “You’ve been through a lot. Do you feel like it’s been worth it?” Mark was sitting in his dysphagia group dining area, in a wheelchair with a bib, being spoon fed cream soup. He looked at the psychiatrist blankly. At least the rabbi had given some effort to ramp up to the heavy hitting questions, I thought.

It’s an inevitable part of this experience, this inquiry about how each of us is making sense of this. People look for finger- and footholds when they’re heading up a mountainside. Where we are is not a stopping place: we either have to find a way up or find a way down, and which is the safer route is up for debate.

Yet one thing I have always loved about Mark is his skill at living right here, in this moment. In part, this comes from having lived with his former wife’s cancer for six years. She was diagnosed before their third child was a year old. Two little boys, a baby, and cancer. Surgeries and treatments and remission leading only to more surgeries and more treatments and ultimately, suffering and death. Six years is a long time to ride a roller coaster and at some point, Mark figured out how to hop off. To live in each day only. It was a survival tactic. It’s one he’s kept. This has not always made him easy to live with. I’ve got a dose of East Coast in my blood. I’m a doer. I like goals and challenges. I’ve also got a dose of prairie in my blood, and I was attracted to Mark’s ability to take his time and let life expand rather than constantly kneading it. Yesterday when Mark was rejecting all the soft food lunch options — yogurt, pudding, soup, juice, cottage cheese, ice cream — I said, “What are we going to do, Mark?” He dryly replied, “Panic.” This has been his go-to response to me for years. Mark does not panic. He waits. He watches. He keeps doing what he’s doing until it’s clear to him that something else needs to be done.

The questions about meaning feel like they force something that doesn’t need to be forced. “What’s it gonna be? Now’s the time to choose.” Somehow, though, I don’t feel like we have to. There will be time to make meaning of it. To reflect and wonder. Don’t worry, people. Everyone involved has been baptized. We’re in it for the long haul, regardless of the fluctuations of the moment. I’m taking a page from Mark, and I am just living today.

I have had a lifetime of this question about God. Sometimes when something good happens, I quickly lob a thank you up to the sky. Sometimes when exceptional things come, I pause, wonder, and say thank you. When my kids were little, we had animals. We had lots of animals. Anya’s favorite pets were our bunnies. Anya had a beloved rabbit that she named Rascal, after reading Sterling North’s “Rascal” about a boy who raised a baby raccoon. We had a little outdoor pen that she could put the rabbit in, and one day she found the pen empty. Anya was beside herself. We all searched the yard, frantic to quell Anya’s fear. We looked and looked. Finally, Anya cried out, “That’s it! If we don’t find Rascal, I don’t believe in God anymore!” Then she ran down the sidewalk along the side of the house, tripped, and fell. As she lay there with her knee skinned, crying, she turned her head and there, behind a piece of wood leaning against the house, was Rascal. I wasn’t sure whether this was the Old Testament God smiting her, or the New Testament God having a great sense of humor. But all I could say was, thank you.

Yesterday, I immediately knew that the walk with my Nepalese neighbor was a gift. An exceptional gift. I had the company of someone with whom I was mutually delighted to be with, and who needed nothing from me other than my presence. The fact that I had nothing else to give did not matter.

And so I continually say thank you. I send the thanks up and out in all directions. For the rabbi for visiting. For Mark’s siblings who are so dedicated to loving us. For my school that has helped me have this time to take care of Mark. For my whole family prioritizing Mark. For Cathy from Louisiana who met me in Houston and hasn’t left my (Facebook) side. For Corinne who takes care of Mark’s kids like they are her own. For Mark’s friends who so clearly love him. For my friend Andrea who sends me one photo of natural beauty every day. For Hilary who always knows the right thing to say, which is often “I have no words.” For my friend Beth who gave me a key to her house, just so I know I have a place of respite. For so very many people, all of whom find their own way to be a part of our lives. I’m sending it up, out, and all around. Thank you.

Perspective

Mark was admitted to the hospital via ambulance to the ER last Tuesday. At 5:45 am the next morning, I returned to the hospital and looked at my phone. Battery power at 20%. I dug through my hospital “go bag”: my charger was missing. The nurse told me that the hospital only has one charging station — in the ER waiting room. So back I went to the ER to sit for thirty minutes and charge my phone. There were two receptionists at the front desk, and two men sitting in the waiting room chairs. Man #1 was talking to the receptionists about politics. “There’s a shiny devil in the White House, and he’s there with his whole family,” he shook his head. The nurses made comforting sounds. Man #2 looked at Man #1 for a long pause, and said “Hey, I know you, man, we did time together.” I could see Man #1 stiffen. He didn’t make eye contact. “Man, I’m trying to have a conversation here.” Dissuaded, Man #2 walked over and sat next to me. His eyes were red. “Hey, can I buy you somethin’?” His speech was difficult to understand. I just looked at him. “Whatda you like, liquor or beer?” It was 6:00 am. I wondered how often this pickup line worked. I said I had to go upstairs because my husband was there. “Aw, that don’t matter,” he said. He wandered away and tried to get the receptionists to give him some orange juice. They said they couldn’t because he’d already been discharged. So he checked back in to the ER so he could get some orange juice.

Over the past month, if only I could have gotten Mark to drink something. Not that he needed liquor or beer, for sure, but the orange juice would have been great. I gave him everything I could. I offered it all. He could tolerate less and less. Alma asked if I was counting his calories. At first I wasn’t, and then as time passed, I did. 1200 calories, 800 calories, 200 calories a day. I knew it was not enough. I reported it to the doctors over and over. No, we did not need to talk to the dietician again. I knew what to do. He would or could not do it. They weighed Mark. Rationalized with him. Urged him. Mark is nothing if not a rational guy. This was not about logic. He told me one day that he couldn’t seem to communicate with people why he couldn’t eat. People who have had cancer, like my mom, understood. Everyone else, including me, couldn’t.

Mark fell off the tiny ledge of wellness he was clinging to so fast it was startling. Last Monday, the doctor thought he could hold off on the feeding tube. “Try to drink two Ensures a day, Mark, and then try making it three.” By Tuesday, he was admitted to the ER and by Wednesday, they decided he needed the feeding tube. I somehow hoped that the feeding tube would be the magical device that would turn things around quickly. Instead, he quietly watches people when they talk. “Do you have thoughts in your head, and you can’t figure out how to say them?” I asked. He nodded.

The machine of Mark runs on calories, the units of energy that run our cells. Our cells take calories and use them to make energy for critical functions that keep us alive: growth, reproduction, maintaining structure, and responding to environmental changes. It’s a balance of energy intake and expenditure. Once Mark descended into a cycle of not-eating-leading-to-not-wanting-to-eat, his body began trying to buy him some time to find food by preserving his core organ functions. The less food he ate, the more his body needed to look for other sources of energy. Once the human body uses up fat reserves, it moves on to finding proteins to break down to extract energy, like the proteins in muscles. Energy gets funneled to the critical organs. The brain is lower on the list than heart, lungs, kidneys. His body quickly began adapting to the circumstances it found itself in. Survival.

The person of Mark runs on love. When we first starting dating, he told me about how he grieved after his wife died. He said he’d be walking down the hallway at work and stop, not sure which way he should go. He would go to each of his kids every night and hug them and tell them he loved them. He felt like he needed to be both mother and father to his kids now. He cooked meals, packed lunches, took the kids on hikes, and did his very best despite the grief that was swallowing him whole. After a year, he decided that there could still be more to life. “I felt like I had more love to give,” he said, and so he started dating.

On Monday around lunchtime, my kids came to the hospital to visit Mark with me. Our friend Lizzy joined us. After my separation years ago, money was a concern. My kids and I took in a tenant to help cover the bills. Lizzy and her son Toby lived with us for two years. She is wise and hilarious and irreverent. We love her dearly. Lizzy was with me the night Mark consented to the brain surgery. Looking back, it seems crazy that anyone thought Mark was able to give consent, as the doctors knew the size of the tumor in his brain (we did not). I was sitting there in shock. Lizzy grabbed the consent forms and read through them out loud. “Mark, do you understand that you are giving consent for blood transfusions?” She went through all the critical elements with him one by one, making sure as best she could that he was agreeing.

Lizzy went back to visit Mark again after work on Monday. She stopped in the hospital gift shop and got him the glitziest stuffed animal she could find, which she dubbed “Love Unicorn.” She played Steely Dan for him on her phone. They sang together. He told her “I just wanna pack it in and go home.” The next day, I put Love Unicorn on the back of Mark’s wheelchair. When I came the following day, someone had moved it into Mark’s bed. Love Unicorn is our proxy, keeping watch over Mark when we aren’t there with him.

Now Mark is an an acute rehab hospital. He gets three hours of therapy every day: speech, physical therapy, and occupational therapy. The speech therapist sat with him at lunch yesterday, feeding him soup while he sat in his wheelchair, monitoring his swallowing. They are worried about him aspirating. They are teaching him techniques to swallow safely. Until Mark is able to safely and reliably take in enough calories himself, I have been taught how to feed Mark and administer medicines through the feeding tube. “You might want to wear gloves when you are using Mark’s feeding tube, because gastric juices can back up into it,” the nurse instructed me. The physical aspect of the task will get less daunting; the psychological adjustment is going to take more time.

Life broadens for us, and then narrows down to a fine point. If we’re lucky, it broadens again. It’s the lungs of life that keep expanding and contracting. Mark and I are living at the extremes. He travels along the outer limits of life. I travel beside him in this quiet and still place, and then am periodically flung into an orbit of love and care so powerful and bright I can barely look at it without tears. We keep going. This moment. This now. It’s enough. It has to be.

Happening to You, Too

Mark’s cancer is the center of the target, the kerplunk of the stone in the water. In the crests and troughs beyond are family and friends. The childhood friend who sits with Mark as he struggles; the neighbors who stepped in when Mark’s first wife was dying of ovarian cancer and now are stepping in again; the stepkids having their first experience with a family member having a debilitating illness. This is a guest blog post providing a glimpse of this experience from one of Mark’s stepchildren, my Alma, sharing their view from a ripple in the cancer waves.

My mom’s friend, giving her some feedback on her blog, said she should write more about her experience. My mom, ever the absolute giver, had the gall to say that it feels wrong to write about herself because this isn’t happening to her. Mark is the one suffering. I think back before Mark was diagnosed but when something had started to go wrong — insisting after a ten hour nosebleed that he was fine. It sounds quite silly. “This ten hour nosebleed isn’t a problem.” “My husband’s rare, aggressive, stage 4 cancer isn’t happening to me.”

But I guess I really do understand the feeling. If it’s not happening to my mom, it certainly isn’t happening to me, right? When Mark first got really sick, I remember telling people and hearing their, “I’m sorry.” Sometimes what my inner denial was saying: the grief wasn’t really mine – it was borrowed from my mom and his kids.

Having lived here for a month now, I feel more a part of it. I’ve seen and been part of this inner world not many people are privy to. But still, I’m not his kid or his partner. I get to leave. I will leave. Somehow, on February 4th, I will pack up my things, get in my car, and drive 600 miles away. Away from Mark slack-jawed and slurring. Away from nights when Matthew, Ben, his girlfriend, and I gather to eat dinner together without my mom or Mark. Away from my sister learning how to help with the feeding tube. Away from my mom performing a balancing act I wouldn’t believe if I wasn’t watching it. When I put it like that, leaving doesn’t seem all that much easier than staying.

My friends are all back from their break at college. I feel a million miles away from them. Last weekend, a few of them were messaging me, all of them enjoying their first weekend back for their last semester of college. I understand. I tried to respond to their messages to entertain them. I tried to not be overly enthusiastic but to not perform misery either. It’s a kind of stoicism I’ve learned from my mom. But even when I know it wouldn’t interrupt their fun, I still hold back most of the time. When I talk to peers about it, I mostly feel met with discomfort. They get quiet. They stop making eye contact. They stop asking questions. They stop talking about their own lives. I understand that too. It’s intense. It’s sad. It’s uncomfortable. They don’t know what to do.  

I can always pick out those who do have personal experience – they’re the ones who do reach out, who brave the intensity. It is strange to feel closer to people I haven’t talked to or maintained a close relationship with for years. In high school, a girl tried to get me expelled in eleventh grade. We got together for coffee last Sunday after she messaged me. Her mom had cancer and is still in the waiting period of seeing it comes back. Someone I worked with at my first job responded to my Instagram story. She says, “everything you are feeling is okay.” She tells me about “parallel swimming,” how to survive a riptide. Her mom died last year. Not people I would have considered close to me, but people with whom I now have this shared experience no one else really gets. They are people I hold dear. Sometimes they feel like the only ones I could talk to without exploding.

Last night my sister and I talked on the phone for two hours (after spending three hours together at the hospital). We talk about our guilt. Guilt that nothing we could do is ever enough. Guilt that we get to leave from the hardship while Mom and the kids and Mark live in it. We reassure each other. I tell her about how often Mom and I laugh together. She tells me a quote she’s been keeping in mind: “You will not do, nor will you bear to do all that you have been ordered, nevertheless do as much as you can and be glad.” I realize we are really talking about grief. A grief that is ours. Not one that we borrowed or adopted from the people to whom this is “really happening.”

What I’ve learned is that this is happening to everyone. Yes, Mark is the one who had to go through weeks of radiation and chemo, who must cope with the loss of abilities, who will ultimately have to continue fighting and enduring whatever is to come. Yes, my mom is the one performing superhuman balancing acts. But it is also happening to everyone who loves Mark. And everyone who loves my mom. And everyone who loves his kids, and his family, and my sister and me.

Difficult

Yesterday was difficult. I say that being a person who is not prone to hyperbole. Over the past seven months, I’ve listened to doctors describe Mark using words I’ve heard mostly in the context of geological sciences. It’s really my fault, because I ask a lot of questions. “How did you reattach the bone flap after you got the tumor out of his brain?” “We removed the bone flap by drilling bore holes, and we reattached it using titanium brackets at those locations.” And, “what is going on inside him that he’s bleeding from his nose and coughing out tissue-colored mucus?” “Due to the radiation and the cancer processes, his tissues are friable.”

Yesterday was difficult in a different way. I’d been at the hospital for 12 hours a day all week. My self-care had been going home to sleep at night, rather than sleeping in the pleather chair in Mark’s room. Not to boast, but I also took a shower every day. And ate food. Despite these excellent efforts to keep myself sane, I did manage to back into the garage door on Friday. And my underwear was on inside out. Still, I was proud of my little effort to keep myself going.

My brother Dale came to the hopsital at 8am so that I could sleep in. When I arrived at 10, Mark was more confused than on Friday. He’d only had one day of food after a week of nearly nothing, but still, I thought after being on continuous hydration, getting a unit of blood, and having a few IVs of magnesium, that he’d be returning to us a bit more by now. Dale arrived to Mark having pulled out his IV and refusing to let the nurse assistant clean him up.

Stubborn is in Mark’s general profile. They should have a check list at the top of the patient’s chart for baseline behaviors and attitudes. Mark giving the staff a hard time is annoying, but it’s also a sign of life. Check. He stayed stubborn all day yesterday. He didn’t want the nurses to help him back in bed. After they won that battle, I said to Mark, “What do you need?” “For the Nazis to go away.” “Can we end this part of the story where people are trying to control our lives?” Check.

Proud is also in Mark’s profile. And so it was difficult to see that Mark was in hospital briefs rather than his own undies, because Mark would never, ever allow that if he was aware of it. Uncheck. Anya, my oldest, was game for learning how to use Mark’s feeding tube. I taught her how to check his stomach for residual, flush the line, administer his dilantin, and then end with reflushing one more time. The fact that Mark allowed this without a word, silently watching TV, was completely out of character. Uncheck.

The crew of familiar oncology residents and doctors came in at 11:00. Mark would be discharged. His blood work looked okay, he was tolerating the feeding tube. I looked at them, and then at Mark, who was lying there slack-jawed, breathing loudly, staring straight ahead, not responding to anything around him. A 125 lb human machine that must be so strong despite being so weak; he just keeps going. “He is not at his baseline,” I said. I have learned the power of this word over the past months. “I don’t know how I’m going to get him to appointments, get him to the bathroom…” I’m sure I also looked like a human machine that is strong but weak, trying to keep running but reaching the fumes stage. They shuffled out.

A few minutes later, one doctor returned. They would call for a neuro oncology consult to get their opinion about what’s going on with Mark’s brain, and they called for a PT evaluation to see if Mark was safe to go home.

Part of what’s difficult for all caregivers is to have to realize and then exercise the power you have to advocate for the patient. There’s a comfort in thinking the doctors have this. You want them to be the quarterback who’s going to confidently throw the pass that wins the game. It is not a comfort to realize you really do have to be at bedside as much as possible to speak for the one who cannot. At the ER on Tuesday, I spoke to the oncologist who did not think a feeding tube was required yet. “He’s not eating anything. He’s not drinking anything. He has lost 42 pounds. He sleeps all the time. He’s exhausted.” The next morning, the oncology team decided a feeding tube would be merited. Today, the neuro oncology consult asked me what I mean when I say Mark is confused. I told the man, who was wearing a yarmulke, that Mark is referring to the nursing staff as Nazis. Not his baseline. Alma, my youngest, was there with me. We watched the doctor give Mark a rapid and thorough assessment. Memory, cognition, skeletal muscle function, vision. Mark passed some parts of the testing and failed others. “Generalized brain disfunction,” the doctor said. “Delirium, potentially caused by lack of nutrition. Could be inflammation from the radiation. The CT scan shows that there’s been no recent changes to the brain. Reimaging with MRI would not tell us anything about the impact of the radiation on the tumor. It’s too early post-treatment.” He said several thousand other words. It was hard to take it all in, even with two of use trying to hold onto the stream of information.

We waited for PT. Mark couldn’t form a clear thought. “What do you need?” I asked again. “Can we pull….can we….” he’d try. I went back to the basics: bathroom, water, blanket? Nothing. We’d both give up.

PT tried to get him out of bed. Mark was weak, unstable, confused, exhausted. He didn’t want to stand up. “Why not, Mr. Hrehocik?” “Because I’m losing control of everything,” he slurred. His mouth is bone dry. The radiation knocked out his saliva glands, and with his constant mouth-breathing, he’s hard to understand. The PT turned to me. How many stairs do we have in the house? Where is the bathroom? The list of questions was now familiar. The PT finished and said, “I’m recommending acute rehab. If we put together the need for PT, OT and speech therapy, he qualifies.” With all the fancy specialists attending to Mark, the PT had the power to say, no, this guy is not ready to go home.

The sense of relief was immediately followed by immense sadness. There is nothing Mark would rather do than go home, and I so want that for him, too. I have worked so hard to have him at home with us. I have months of training now of being on top of what he needs at all times. And now he needs more than we can give.

I gave birth to two children, Anya and Alma. I had natural childbirths, alert and aware and working hard to bring them into the world. It took many hours for each, and at the end their beautiful beings entered the room, one with a wail and one with quiet, wondering eyes. Sometimes I feel like a doula to Mark, trying to guide him back into our world. His journey is difficult, and the effort is immense. Sometimes he emerges for a few moments or a few hours, and then he retreats. We keep trying. We will keep trying.

My kids and I left the hospital last night at 6pm. One rode off on her motorcycle to her apartment. The other hopped into their own car to meet me back at the house. Tomorrow I will begin working with the hopsital to find an acute rehab placement for Mark. Another day. Difficult.